March 21 marks World Down Syndrome Day (WDSD). As a parent of two little ones, I often lose track of the days. However, I can sense the significance of this occasion approaching when my social media feeds begin to fill with calls to “rock my socks” and “celebrate ability.”
Being part of the Down syndrome (DS) community is something I cherish, and I believe every individual with DS deserves recognition every single day. Yet, I’ve contemplated opting out of this celebration. There are moments when I wish I could take a breather from the challenges associated with DS. For instance, I once walked into my older daughter Lily’s room to find her unzipping the footie pajamas of my younger daughter Mia, who has DS. Mia struggles with the strength and dexterity to perform this simple task, a skill Lily, who is 19 months younger, mastered long ago. While it was an adorable scene, my mind spiraled into thoughts of the future. I worried that if Lily were to face Alzheimer’s in her later years—a risk heightened by Mia’s extra chromosome—Mia would need to show her the same kindness she received.
There are also times when I see Lily nurturing her dolls and someone comments on her being “such a good mommy.” My heart aches a little, knowing that while she may aspire to motherhood someday, the reality for Mia could be different. I often think about our family vacations and the guilt that arises from spending money that could otherwise support Mia’s future needs.
These fears are typical for any parent, right? We all know someone who has confronted difficult illnesses, longed for dreams that never came to fruition, or faced financial struggles. The distinction lies in the fact that DS has stripped away the ignorance many parents enjoy. From the moment Mia was born, we’ve been acutely aware of the risks and challenges associated with her extra chromosome, framing our worries in a context that many parents may not grasp immediately. Just like chronic pain or that persistent teenage crush, there’s no escape from the realities of DS; it has become a central part of our lives.
Despite the weariness that sometimes accompanies these challenges, I’ve formed a deep appreciation for the condition. When I see babies in public, I often find myself hoping to catch a glimpse of the traits associated with DS. Encountering another person with DS instantly creates a silent connection with families I barely know, yet who share the joys and trials that accompany loving someone with DS. Mia embodies the essence of this condition; it does not define her, but it plays a significant role in shaping her vibrant personality—she is the most enthusiastic, genuine, and loving person I know. While some may dismiss this as a mother’s bias, I witness her positively impacting those around her daily.
What once kept me up at night—the fear of Mia being seen solely through the lens of her DS—has transformed into a source of empowerment. She has the ability to change perceptions and bring joy to others simply by being herself. In a world where some countries are actively working to eliminate DS prenatally and others feel compelled to justify their existence, I take pride in how Mia helps dispel outdated misconceptions, merely by living her life. I can confidently assert that Down syndrome enriches my life daily, but that’s not the sole reason I’ve decided to participate in WDSD this year.
Recently, I observed Mia struggling with some blocks that were a gift for Lily. While Lily demonstrated a stronger aptitude for stacking them, Mia, despite her fine motor delays, persistently attempted to connect the blocks with unwavering determination. When I reached to help, she firmly said, “Help, no!” Her confidence shone through as she worked to place each block, even as Lily rapidly built a perfectly symmetrical tower. Despite my instincts to correct Mia’s wobbly construction, I couldn’t help but smile when she finally succeeded. The joy on her face as she ran to me for a high-five was priceless.
Couldn’t we all use a little more celebration in our lives? Every block, every lesson learned, every small victory—what if we approached each moment with gratitude and joy? Mia shows me how to embrace life’s struggles with unyielding perseverance and a unique definition of success. She dances freely to her favorite songs, laughs at her own jokes, and builds structures that defy conventional expectations. Mia finds joy by being her authentic self because she knows no other way. Despite the challenges that come with DS, she continues to thrive and celebrates the small victories that often go unnoticed.
So this WDSD, let’s celebrate like Mia and countless others with Down syndrome: revel in the little steps and simple joys, love unconditionally despite differences, spread happiness, and create your own narrative, regardless of what others may think or say.
For more insights and perspectives, check out this excellent resource on pregnancy and home insemination at Parents.
Summary:
This piece reflects on the significance of World Down Syndrome Day through the lens of a mother navigating the joys and challenges of raising a daughter with Down syndrome. It emphasizes the importance of celebrating small victories and fostering a positive outlook on life, inspired by the resilience and authenticity of those with DS.